Sunday, May 30, 2010

Conor made a major breakthrough today with a little help from Shrek and some careful planning by Mom and Dad. Conor has not gone to a theater to see a movie since we took him to see Cars and left 5 minutes into that movie. That was about 4 years ago and Conor has not wanted to go into a theater in the time since.

In fact Conor does not generally want to go into crowded environments like malls but we noticed he had been improving lately and we were waiting for an opportunity to try our luck with another movie. Recently he has been watching an old Shrek video so we had decided to give it a go with the new Shrek movie.

We waited until SHReK The Final Chapter had been in theaters a few weeks and we went to an early showing this Sunday afternoon. Before arriving we ate Uncle Burgers at A & W, one of Conor's favorite meals, so he had a full belly. Then we arrived just before the showing of other movie previews. We picked seats at the back corner and things could not have gone any better. Conor laughed quite a bit during the movie and smiled though out. He enjoyed every minute. We started out with a Dad arm around him but he did not need that either after a bit.

Conor deserves full credit for the progress he has made. Mom and Did helped a bit. That's what parents do and we felt great over the result. Great? We are ecstatic. And a thank you to all those behind SHReK The Final Chapter for a helping hand with our Buddy.

We hope to make another try with Toy Story 3 after its been out a few weeks.

John Elder Robison, for reasons that are unclear to me, is both an officer with Autism Speaks AND a critic of parents who seek cures for their children's autism disorders. Mr. Robison apparently has an Aspergers diagnosis. He is, according to a biography posted online at Red Room, an author, very successful businessman, and ... a former rock band member. He is not a researcher or health care professional and as far as I can tell he has absolutely no personal involvement with Autistic Disorder or those who are severely affected by their Autistic Disorder.

The life of John Elder Robison has no resemblance to my son's with Autistic Disorder and profound developmental delays or the lives of the 75-80 per cent of persons with Autistic Disorder. and Intellectual Disability. Like Alex Plank, Amanda Baggs, Michelle Dawson, Ari Ne'eman , and the entire corporate board of ASAN, JE Robison is a person with very High Functioning Autism or Aspergers who purports to tell parents of severely autistic children, and the world, what they need to know about all points on the autism "spectrum". John Elder Robison has been to IMFAR the annual mega autism research update and he is back to tell us that all is cool, all is geeky.

IMFAR has divulged, amongst other autism research breakthroughs that will help improve the lives of severely autistic children and their families, that having an autistic child does not increase the likelihood a couple will be divorced. Great stuff, there is hope indeed that autistic children will live better lives with that kind of groundbreaking scientific scrutiny taking place. Of course if we can improve the sensitivity and communication skills of PARENTS their autistic children will live better lives. No more talk of mercury, aluminum and other ingredients injected into children, or of the toxic materials that ooze from plastic toys and jewelry, or are inhaled from nearby smokestacks, or the ultrasound pounding of the brains of unborn children because environmental insults can not possibly cause neurological damage. And hey Andrew Wakefield was found to be unprofessional and therefore vaccines and toxic vaccine ingredients and vaccines contaminated with pig viruses should never, ever be questioned.

For Mr. Robison's part he informs us that IMFAR was a pretty cool place to be because, well, because there were lots of geeks there, and geeks are cool. They are "endearing and appealing" and of course there is the familiar JE Robison refrain that talk of curing autism is nonsense. You can help improve the debilitating aspects of autism disorders but you can not outright cure autism or autism(s):

"That summary pretty much describes all these folks on a professional level. These are not nine to five workers. There lives do indeed revolve around the unraveling of their individual bit of the autism puzzle. There is no talk of "cure" here. ... Many are married to geeks, or have kids on the spectrum, or seek to marry a geek or geekette. I have seen that particular scenario play itself out time and again these past few evenings in the after hours get-togethers. ... In closing, I will offer you this essential truth derived from my careful observation of my own Cubby, Alex Plank, and other young spectrumites in attendance here: If you are a female entering this world, be forewarned that it is a one-way trip. For once you Go Geek, there is no turning back. It only takes one date with an eccentric scientist or engineer – after that, an ordinary banker or business person will never do . . ."

What is the difference between a treatment which ameliorates and a total cure other than the extent to which the autism disorder is "ameliorated"? John Elder Robison does not explain nor does he provide any basis for his declaration that autism disorders CAN NOT be CURED and WILL NOT be CURED. None at all. We, including those of us who have severely autistic children, are to take his word for it because, well because John Elder Robison is slightly autistic.

Although Robison is a very successful businessman, a father, a former rock band member, published author and a person who does not shun the media glare he knows better than me as a father who has cared for a severely autistic, intellectually disabled son for 14 years what it truly means for my son to be autistic.

For John Elder Robison autism is not about an inability to communicate, self injurious behavior or living your life in a residential care facility. And it is certainly not about the intellectual disability that is just coincidentally associated with 75-80 of those with Autistic Disorder. For John Elder Robison autism is about being a geek and not talking about finding cures for autism disorders.

Apparently IMFAR was a great place to be geeky and no one fouled the air with talk of curing autism

Saturday, May 29, 2010

Last week we were visiting my family in the Annapolis Valley in Nova Scotia with a side trip to Black Rock for some beautiful scenery and some pictures. The trip went very well and Conor enjoyed himself. He did miss his usual routines though including his Saturday morning trail walk with Mom and Dad. He was happy to get back on the trail this morning and we capped it off with a trip to McDonald's. We also had some company along the way.

Wednesday, May 26, 2010

I punched "autism" into the Twitter Search bar and one of the entries referenced a CNN Entertainment story titled "Prime-time television tackles autism". When I saw the headline I assumed that the story referenced Aspergers not Autistic Disorder and I was right. In movies or television, fiction eg. Boston Legal, or news Aspergers is the face of Autism while severely disabled, including intellectually disabled, persons with Autistic Disorder remain safely hidden out of sight ... and out of mind.

And of course US President Barack Obama's administration has seen fit to place a very high functioning University student with Aspergers, who does not view autism as a medical disability, and presumes to speak on behalf of those severely disabled by Autistic Disorder when he claims that "WE" do not want to be cured, on a national disability council and on the Interagency Autism Coordinating Committee. At the same time the good doctors in charge of the DSM-5 are busy converting the alleged autism spectrum of disorders from the original Autistic Disorder into one consistent with High Functioning Autism and Aspergers.

Yes, the final step on the exclusion of those with Autistic Disorder and Intellectual Disability, comprising 75-80% of those with the current Autistic Disorder diagnosis, from the Autism diagnostic category is well under way. with the creation of the New Autism Spectrum Disorder in the DSM-5.

When the DSM-5 autism revisions, and exclusion of low functioning persons with Autistic Disorder, are complete no one will notice. They will be too busy watching characters with Aspergers on re-runs of Boston Legal and Parenthood.

He loves school, which for the past 3 years has been Nashwaaksis Middle School, and it has been a good experience for him. Yesterday we had to bring him home early because he wasn't feeling well. Today, Wednesday, he has to stay home again but he doesn't like it.

Conor expects to be in school and not being in school today, Wednesday, bothers him ... a lot. He is screaming some, crying some, and repeating over and over again "School on Wednesday, School on Wednesday, School on Wednesday". Some times he starts with Monday stopping at Wednesday: "School on Monday, School on Tuesday .... School on Wednesday".

Several prominent health authorities and researchers have stated that there is a need for stronger science on autism vaccine issues including Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Irva Hertz-Picciotto..

Sunday, May 23, 2010

Shadows distract autistic kids is the title of an article in the Times of India which reportedly shows that while people can look at the shadow of an object and often figure out what the object is, shadows interfere with how autistic children recognize objects. The study however involved only high functioning autistic children. Low functioning autistic children were, once again, excluded.

Notwithstanding the involvement of only High Functioning Autistic subjects the article states with reference to autism generally:

"These new findings shed light on the sensory abnormalities that accompany and possibly even help cause autism, the researchers said ... in autistic children, the presence of shadows — either matching or not matching the objects — interfered with recognition, making them take a little less than 350 milliseconds on average to do either. Instead, they reacted faster when there were no shadows present, recognizing objects in roughly 310 milliseconds. A possible explanation is that in autism, shadows go from being simple features worth a glance to extra details they hyper-focus on, potentially eating up their attention."

Is it possible to draw conclusions about the entire autism spectrum based on studies which exclude low functioning autistic subjects? Personally, I am doubtful.

Friday, May 21, 2010

The BBC is reporting a study that shows an increased risk of autism in children emigrating to the UK from Africa, the Caribbean and Asia with the risk being as much as 5 times greater for children of parents from Caribbean countries. The study may be the final nail in the coffin of the "it's gotta be genetic" cult like mindset that has dominated the thinking of public health authorities over the past twenty years:

Speaking on Health Check, Dr Daphne Keen, from St. George's Hospital London, said while the findings show a clear link between immigration and autism - they could not determine exactly why this was the case.

The research covered 428 children diagnosed with autism during a six-year period. "We didn't find there was an increased risk in the parents who had migrated from other European countries," Dr Keen added. "The size of the increased risk was greatest for the Caribbean group. This was at least five times. "The risk was also very significant, but slightly less, for the African population and much lower, but still a little present, for the Asian population." Two factors The study took into consideration that it may just be a case of ethnicity - rather than migration - that caused the rise in cases.

The study took into consideration that it may just be a case of ethnicity - rather than migration - that caused the rise in cases. However, researchers compared their results with children born of UK-born parents with Caribbean, African and Asian roots. "We found when we analysed the two factors together, that the risk fell considerably.

"It seemed to suggest that immigration was the major factor, and ethnicity was just possibly a factor." One theory is that the stress of migrating could act as a "trigger" for the disability, a factor discovered in similar studies looking at the causes of schizophrenia."

It is interesting that the study authors immediately point to "stress" and "isolation" as possible factors but the obvious point is that there could be many different environmental factors arising in each area that contribute to the different rates of autism disorders. Perhaps those who are genuinely interested in discovering all possible causes of autism disorders could look at exposure to toxic environmental substances from industries like mining,, differing vaccination schedules, exposure to different quality vaccines etc in the various countries studied even.

If the reported autism rates are closely tied to the process of emigration per se then perhaps it would be helpful to examine the vaccine schedules of people emigrating from the Caribbean and compare them to vaccines required from people emigrating to the UK from other European countries. Are children emigrating from the Caribbean required to take more vaccines closer together in time in order to become eligible to emigrate to the UK than children from other European countries?

If the door to an open mindset on the environmental causes of autism has finally been kicked open then let's leave it wide open and do some real environmentally focused autism disorder research. Let us not assume that stress and isolation cause autism and that lead, cadmium, mercury and vaccines do not. Parents genes have been under the microscope for decades. It is long past time for the IACC and other world health authorities to stop pretending that autism iis 100% genetic and do some real autism research.

If you are a semi-regular reader of this blog you may have noticed the link to Goody Bledsoe, a book by Conor's mother Heather Doherty that I have posted on the sidebar. I have now added a link to Writers' Grimoire the new blog co-authored by Heather and her long time friend, and fellow author, Norah Wilson.

Heather's writings are not about autism. She is a dedicated mother who is actively involved in all aspects of Conor's life but her writing is her writing, it is a part of her life that does not revolve around autism. Heather and Norah as a team write in a category, YA, which, as I understand it, is different from the romance category that Norah writes in individually and the literary category that Heather writes in. For those who question my credentials to write about autism on this blog don't worry. I am not competent, and I know I am not competent, to write about literature, romance or YA.

This blog is about autism, and about Conor, and the Wilson Doherty team has an interesting connection to Conor's life. Heather and Norah met many years ago when they both worked as legal secretaries at a Fredericton law firm which was located at that time down the road, literally, from the office of the law firm where I worked at the time. That is where I met Conor's future mother when I dropped by to pick up some legal documents for a lawsuit in which the lawyer for whom she worked was opposing counsel. Conor's very existence can be traced back to that law suit and to the law firm,where the writers who now write together as Wilson Doherty also met.

For Wilson Doherty that law firm was a connection that became the beginning of a long friendship and ultimately a writing collaboration.

For Conor that law firm, and the law suit that introduced me to his mother, was a connection that ultimately gave rise to his very existence.

Tuesday, May 18, 2010

Where do adults severely affected by autism disorders, and others living in institutional residential facilities go, when the institutions close? It is one of the questions being asked in Manitoba right now as that province ponders what to to with an aging residential institution, the Manitoba Development Centre in Portage la Prairie, pictured above. Its current residents are growing older and the Centre's population is declining. Some of the residents are severely intellectually disabled for a variety of reasons including some persons with autism disorders. Some require constant care and a team of professionals and staff. Many people are outraged or frightened at the thought of their severely disabled autistic adult children living in such a facility but what is the real world alternative for the severely affected by autism disorders and intellectual disabilities?

"There are 285 complicated cases at the Manitoba Developmental Centre, the sprawling campus surrounded by trees on the north side of Portage la Prairie. It’s home to people with severe intellectual and developmental disabilities caused by everything from a traumatic birth to severe autism.

Some are high-risk offenders prone to aggression or sexual crimes like exposing themselves or voyeurism or worse. Those people, mostly men, are kept on a locked ward.

Others are deaf and blind from childhood measles and many have physical disabilities — they’re confined to wheelchairs, they suffer debilitating muscle contractions that contort their bodies, they have seizures.

Most — about two thirds — have been largely abandoned by their families and are wards of the public trustee. They get no visitors."

That grim but realistic depiction of life for some persons with severe functional limitations is a future that awaits many of our children with Autistic Disorder and severe Intellectual Disability. But what do we do about it? Do we close the institutions? If so, as the WFP asks, then what?

In Manitoba public consultation will begin this summer into the future of the MDC. Presumably that discussion will include consideration of a new systemic approach to providing care, real world care, not ideological, feel good puffery, for those severely disabled including those severely affected by autism disorders.

It might be helpful if those participating in that discussion consider the following articles by Dr. Bernard Rimland, the now deceased hero to many parents of autistic children who brought an end to the very harmful "refrigerator mothers" theory of autism development:

"Startling new statistics indicate that the death rate for mentally retarded individuals in community settings is dramatically higher than the death rates for comparatively disabled individuals in institutional care."

2. Re-Open the Institutions - Advocates Reverse Stand as "Community" Tragedy Unfolds, Bernard Rimland Ph. D.
"It has quickly become apparent that the cure - closing the institutions - is often worse than the disease. ... Millions of Americans with these life-long handicaps are at risk for poor quality care , questionable and even criminal management practices by service provides, and lacklustre monitoring by public health and welfare agencies ... A disturbing pattern of abuse, neglect and fiscal mismanagement has emerged:... Employees at small, community based facilities are often under-trained, poorly paid and inadequately screened. ... Death can come quickly to those removed from institutions. Ten patients dies after being removed from the Porterville Development Centre into group homes. "Most were middle aged and lived most of their lives in state centers.".. Many medically fragile or behaviorally disordered clients are a danger to themselves and others when placed in group homes where staff training is inadequate, supervision is lax, and local doctors are ignorant about developmental disabilities. Such individuals need other options including institutions. Rather than closing down the institutions we should update them, replacing the very expensive medical model of wards and white coats with with residential model in which residents live in home-like settings in which they are protected from, but not isolated from the outside world."

I recommend that the good people of Manitoba take a reality based approach to developing a residential care system for the most severely disabled. I say this from the perspective of a severely disabled autistic 14 year old son. I say this from the perspective of someone who has visited the regional hospital facilities at which some adult persons with autism have lived. I say this from the perspective of a lawyer who has represented some youths with Aspergers who have had legal problems arising from life in the group home.

I do not want my son to live out his days after I am gone in a psychiatric hospital ward but I don't want him thrown into a group home where his security and care requirements will not be met. I hope the people of Manitoba ... and the people and government of New Brunswick .... develop modernized residential care systems for persons with autism disorders who are intellectually and otherwise disabled. I hope that the system includes community group home and institution options.... modernized institutional options as suggested by Bernard Rimland Ph. D. the man who did so much to help rid the world of a harmful non-reality based ideology the refrigerator mothers theory of autism.

Let's replace our current systems of residential care placement for adults severely affected by autism and intellectual disabilities with a reality based, evidence based system which provides options for our adult autistic population including options that protect, in a humane way their care and security needs.

Noise can be a big problem for some people with autism disorders. A Noisy Nightmare by Hugh Adami in the Ottawa Citizen, tells the story of Bailey Gauthier and her autistic son Dominic who had to leave their Ottawa area apartment and move back home with Bailey's parents because of the impact on Dominic of persistent loud music from a neighbour and the inability to obtain relief from an unsympathetic landlord. The noise was actually harmful to Dominic:

“Music off, music off,” a panicked Dominic would shout after the neighbour’s stereo started to blare. In an attempt to block out the sound, Gauthier says Dominic would repeatedly smash his head against the wall, slap himself and throw things.

Gauthier would physically restrain him, but that would be a frightening ordeal, too, as Dominic would begin to hyperventilate and foam at the mouth. He would kick and scratch his mother. Gauthier would even take him for drives to get him to calm down and fall asleep."

Obviously noise can not be eliminated from life. When it reaches certain levels it can be dangerous to anyone though and for some with autism that level is reached at a different point because some people with autism disorders are particularly sensitive to noise. Noise generated persistently by an unresponsive neighbour in an apartment complex caused serious problems for Bailey Gauthier's son, Dominic.

We don't live in an apartment but the effect of environmental noise on Conor is still obvious. Walking at this time of year brings great joy for us and Conor and Dad enjoy it. But you do get more motorcycles with the amplified noises that many bikers enjoy. Even the wind can cause Conor to react briefly as he did in the photo above. The wind will occasionally blow in strong gusts crossing the Westmorland Street Bridge as it did yesterday and the metal rails will generate brief outbursts of very loud, humming sounds. Fortunately such environmental noises tend to be brief or you can simply continue on to avoid them.

When the noise is loud and persistent though, when it strikes a child with an autism disorder in his home ,as it did to Bailey Gauthier's son, serious harm can result and moving out may be the only real option.

Thursday, May 13, 2010

The following letter appears in the May 13, 2010 Letters to the Editor Section of Fredericton Daily Gleaner and is an edited for length version of a post published recently on Facing Autism in New Brunswick and forwarded to our political and public service leaders.

Residential care and treatment facility needed

Re: Help for autistic adults in New Brunswick

I am writing as the father of a 14-year-old son with severe Autistic Disorder and within 48 hours of the deaths of severely autistic 22-year-old Benjamin McLatchie, and his father Daniel McLatchie, in nearby Gray, Me.

The Maine state medical examiner's office has ruled the case a murder-suicide. The father shot and killed his son and himself.

Reports describe the father as a caring, stay-at-home man who despaired for his son's future, in a state with inadequate residential care for autistic adults, after his own inevitable passing.

There is speculation that the father's fears and despair might have prompted this tragedy.

Many parents, including here in New Brunswick, fear what awaits our autistic children after our passing.

In New Brunswick, the governments of former-premier Bernard Lord and current Premier Shawn Graham have both been world leaders in helping our autistic children. The same cannot be said with respect to autistic adults.

Autistic children aged 2-5 can receive government funded early intervention program from trained service providers. The Stan Cassidy Centre's autism pediatric tertiary care team is of great assistance to many autistic children.

The UNB-CEL Autism Intervention Training program has received expert recognition for its program and has trained several years worth of early intervention workers, teacher assistants and resource teachers in autism specific interventions.

Many autistic children have received the benefit of a flexible, student-oriented approach to educating autistic children in neighbourhood schools, where those autistic children, who can learn in a regular classroom, do so. Those, like my son, who require more individualized curriculum and training methods and place of learning adaptations, do so in environments structured for their specific needs and strengths.

In adult care, however, New Brunswick has been stalled.

We have not established a residential care and treatment system that would provide assurance of a decent, respectful future for those autistic adults who will live dependent on the care of others - adults like Benjamin McLatchie in Maine.

Group homes are not adequate for all of New Brunswick's autistic population.

Right now, many parents are struggling desperately, and facing severe challenges, while trying to care for their adult autistic children at home.

The most severely, low functioning autistic adults live at the psychiatric hospital in Campbellton, far from parents and loving family members.

Of urgent importance has been the need for a geographically centralized combined residential care and treatment facility for autistic adults in Fredericton - close to the resources and expertise of the Stan Cassidy Centre, the UNB-CEL Autism Intervention Training program, and the University of New Brunswick Department of Psychology.

Wednesday, May 12, 2010

Yesterday when I picked Conor up at school Brad, a Teacher Assistant , had a gift for him. Some of the people who work with Conor know he likes the Cat in the Hat and when they saw this housecoat they had to get it for him. Conor is happy with his new housecoat. He has been very fortunate to have some kind, caring people working with him at school.

Monday, May 10, 2010

"The difference with us and Harold Doherty for instance, is that do not draw a line above a notional IQ of 70, or a given level of functional speech and say, I don't care about the rest of you. We care about everybody."

I don't know what facts, if any, that Larry Arnold bases his conclusions on. I don't know how he has concluded that I do not care about high functioning persons with autism spectrum disorders. For the record though he is wrong.

As a member of the Autism Society of New Brunswick I worked with a gentleman with Aspergers who was a major contributor to our organization and to the Canadian Senate committee that examined a number of autism issues in Canada. I consider him a friend, from whom I learned much and have great respect for what he has accomplished. As a lawyer I have provided legal services to some persons with autism disorders, including Aspergers, on a pro bono basis. Since Laurentius Rex is fascinated with Latin he will know that pro bono is derived from the Latin "for the public good" and means in everyday language without compensation or free of charge.

I am not offended by Mr. Arnold's comment even though it is wrong. It will be accepted without questioning by other members of the Neurodiversity ideological segment of the autism community. Others will not even notice it. I have had many nastier comments made about me than that by members of the "Neuordiversity" community.

I include Mr Arnold's comment for two reasons. The first is the relatively civil language used.The second, but more important reason, I highlight Mr. Arnold's comment is that it illustrates the anger felt by many persons with Autism Spectrum Disorder diagnoses and high functioning abilities toward any mention of Intellectual Disability in connection with autism. I write often about the very clear association between Autistic Disorder and Intellectual Disability. That is enough to invite personal attacks and has invited some angry responses in much less civil language.

To me it is obviously more than just co-morbidity, more than just mere coincidence, when 75-80% of persons with Autistic Disorder also have Intellectual Disabilities. Simply pointing that out is enough to invoke hostility, even gently expressed hostility, from members of the Neurodiversity community. Laurence Arnold doesn't approve of my discussion of Autism, specifically Autistic Disorder, and Intellectual Disability. He is not alone in his disapproval.

Mr. Arnold is free to react with hostility to my discussion of these related conditions. He will be joined by others less civil in language than he but I will not be dissuaded. I will continue to talk openly and honestly about Autistic Disorder and Intellectual Disability.

Sunday, May 09, 2010

Honest discussion of many autism subjects will invite hostility from different quarters of the alleged autism community. One example is the connection between Autistic Disorder and Intellectual Disability. Few will even discuss the obvious fact that many persons with Autistic Disorder are also Intellectually Disabled. Attempts to discuss Autistic Disorder and Intellectual Disability are met with overt hostitlity even though Intellectual Disability is a fact of classic autism or Autistic Disorder:.

This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.

(emphasis added -HLD)

With the expansion of the definition of autism in the 1994 DSM-IV the concept of autism has come to include many very intelligent, high functioning persons as autistic and the intellectual disability component of autistic disorder is erroneously but intentionally set aside as a "comorbid" or "coincidental" condition, a process that will be worsened with the New Autism Spectrum Disorder category in the DSM-5. The obvious connection between autism (pervasive developmental delay) and intellectual disability will be pushed even further from our consciousness.

The Ride Across Canada For Autism Spectrum Disorder, 2011 has elicited support from a number of prominent autism organizations in Canada and the United States including, as listed by web site info on the Ride Across Canada Facebook page, autismcanada.org, autismsocietycanada.ca, autismontario.com, racing4autism.ca, autism-society.org and generationrescue.org. It is also endorsed by some very strong and credible autism advocates that I have either met personally or via the internet, people whom I genuinely respect and appreciate for their hard work and commitment to helping people with autism disorders in Canada and around the world. This looks like an outstanding project being undertaken to raise autism awareness and I wish every success for it but, because we are talking about autism, imbued as it is with so many controversies, I ask what kind of awareness will be raised and what specific goals will be targeted with this effort?

One of the Facebook supporters for the Ride Across Canada for Autism Spectrum Disorders is Jonathan Howard who knows a thing or two about crossing Canada for autism having done exactly that when he ran across Canada. I met Jonathan when he stopped in Fredericton and he is an outstanding young gentleman who has given much for others and will undoubtedly continue to be a major contributor, helping other people, for many years to come. I have no doubt that the forthcoming Ride for ASD's will make more people hear of autism as they did with Jonathan's run but what exactly will they learn about autism and what needs of persons with autism disorders will be brought closer to completion anywhere in Canada by this project?

My comments are not meant in anyway as a criticism. I commend organizer Scott Carpenter and I genuinely have a good feeling about this effort which has attracted strong support out of the gate. My comments are meant to ask what specifically will be said about autism disorders with this great effort? What will Canadians learn about autism realities beyond the feel good tripe routinely circulated in the mainstream media about autistic savants and autism successes stories exemplified by the incredible Temple Grandin?

The title of the project is a good start. I no longer believe that there is one single autism disorder. I believe that there are many different autism disorders. Still for the public to learn that autism is a disorder, or a number of disorders, is a very good start and will help break through the feel good nonsense of those who would tell us that autism is a joy and a blessing that we should embrace.

It will be important for the public to hear the whole truth about autism spectrum disorders. While there are indeed some very high functioning autistic persons who have been very successful and contributed much to society there are many persons with low functioning autism and intellectual disabilities some of whom injure themselves very seriously and some of who wander away never to be found alive. The public should know that there are many adults severely affected by autism disorders who spend their lives lonely and living in institutional facilities far removed from families. The public should know that right now, at this very instant, we are in dire need of funding for adult residential care and treatment facilities that will allow all adults with autism disorders to live a decent, happy life closer to family and community.

The public should know that, to date, only ABA enjoys a solid base of evidence in support of its effectiveness as an autism intervention that actually helps autistic children. This does not necessarily mean that other biological and dietary approaches do not actually help improve the conditions of autistic children. What it does mean is that the research to support their effectiveness is still lacking or disputed at this time. The public should know that research is needed to provide the evidential support for more autism interventions, to help us understand all causes of autism disorders genetic AND environmental as we search for more treatments and .... for the cures of autism disorder that do not presently exist.

The Ride Across Canada holds out considerable promise for raising autism awareness. I wish it every success and hope that the Ride generates awareness about the real challenges of autism disorders, the real needs that must be met and .... the focus on specific goals that must be met in order to actually get something done to help improve the lives of Canadians with autism disorders.

Wednesday, May 05, 2010

I had just posted this comment when I read the CP Breaking News update Parents with more education less likely to let their daughters get HPV shots featuring extensive commentary by Field Marshal Paul Offit the man with great vaccine credibility ... with the main stream media ... not so much ... maybe none at all ... with parents, including apparently better educated parents. Personally I think including Paul Offit in an article about vaccine safety is counter productive if parents are the audience that authorities are trying to convince. The article despite the education levels of the parents, blames the internet for leading these parents to question public health authorities pronouncements on vaccine safety. As always the possibility that parental concerns might be legitimate is not referenced in the article. The Offit Offensive ... the insanity ... continues.

The latest news from the Vaccine-Autism front is summarized succcinctly in the CBC headline Child vaccine refusals increase in U.S. The article reports on the study by Philip Smith and his colleagues of the U.S. Centers for Disease Control and Prevention in Atlanta which found that "between 2003 and 2008, the percentage of parents who refused or delayed vaccination doses "increased significantly from 22 per cent to 39 per cent." Authorities will scratch their heads over this information, will wonder how they can get through to those stupid, ignorant, hysterical and ill informed parents who do not accept their dictates about what is best for their children. They will continue to follow the same insane strategy of trying to convince parents, while insulting them, that all vaccines, and all vaccine ingredients are always safe no matter how many times they are given and no matter what contrary information they might stumble upon.

What the authorities will not do, can not do, is acknowledge that they have not always been forthright in addressing public concerns and that they have ignored credible health professionals who in fact do have questions about the state of the "science" on vaccine safety particularly as it pertains to autism.

If anyone from American or Canadian public health offices reads this blog commentary and decides that what I say in this comment is typical "anti-vaxxer" nonsense they should know that I have two sons all of whom have received all of the recommended vaccine shots. I have never attributed my youngest son's severe autistic disorder to vaccination although I do have an open mind on the issue now. I do not believe the rhetoric of the failed, and insane, strategy of public health authorities and mainstream media giants who simply dismiss parents, health professionals and researchers who question whether "science" has actually determined for all time that all vaccines are always effective and safe. The strategy has failed and yet the strategy continues to be relied on by the same authorities and media giants hoping for a different result.

On January 24 2009 in Einstein's Reply to Paul Offit I questioned the rationality of public health authorities and professionals who keep following the same failed strategy to convince parents to vaccinate their children and expecting to see different results. I set out two quotes as an introduction to that comment:

"These outbreaks have not, apparently, been sobering. If anything, the number of parents choosing to delay or withhold or separate vaccines is increasing. So what will it take?
Paul Offit
Insanity: doing the same thing over and over again and expecting different results.

Albert Einstein"

It is now 16 months later and Paul Offit and company keep doing the same thing over and over and over again and keep expecting to see different results. The insanity has not ended and there are no signs that it will. There are no signs that public health officials or the mainstream media will abandon the Offit strategy which has been an utter failure. The increases in vaccine refusals are clear indicators that it is insane to keep following the Offit strategy and expecting a different result.

Insulting Jenny McCarthy and other parents fighting for their children will not work. Let me repeat that one since it is quite simple yet difficult for Offit and company to grasp: insulting Jenny McCarthy and other parents fighting for their children will not work.

Ignoring health professionals and researchers like Dr. Bernadine Healy and pharmaceutical official Dr. Julie Gerberding, both of whom have previously stated that a study comparing autism rates of existing vaccinated and unvaccinated populations could and should be done will not work. Ignoring a clinical and academic neurologist and parent like Dr. Jon Poling who has called for more environmentally focused autism research, including more vaccine oriented autism research will not work. Ignoring a researcher like Dr. Irva Hertz-Picciotto who says that the studies allegedly disproving a thimerosal autism connection are flawed and that stronger sceince is needed on the issue.

Playing politics by appointing those like Ari Ne'eman who oppose curing autism to the IACC will not work. Allowing an Alison Singer, nominated to the IACC by Autism Speaks, to abandon that organization's mandate by voting against an historically crucial recommendation for the comparative autism vaccine study before jumping ship to join Paul Offit at the Autism Science Foundation, will not work.

Parents know that the "science" on vaccines and autism is not as solid as portrayed by the Offit media armies. They know that research of vaccine and other potential environmental triggers of autism has been discouraged since the 1990's. They know that public health authorities like the IACC have pushed the flawed thimerosal autism studies while refusing to conduct the comparative studies recommended by Gerberding and Healy and while refusing the Hertz-Picciotto and Poling recommendations for stronger scientific research on thimerosal and other vaccine autism issues.

I am a parent who vaccinates my children but still has questions about vaccines. I acknowledge the important role that vaccines have played in public health and disease prevention in children. But there is a resource which is even more important in protecting and promoting the health of children and that resource is parents. It is that resource which has been subjected to unrelenting attack by the Offit armies as part of a failed and insane strategy to convince parents to vaccinate their children.

It is long past time for the Offit armies, including the new Autism Science Foundation, mainstream media like the NYT, the Chicago Tribune, the Globe and Mail and PBS and internet foot soldiers like the blogging sites listed on the Autism Science Foundation web site to leave the field. It is time for health authorities and researchers who understand that parents are the number one resource in child health promotion to work with parents and address their concerns instead of dismissing them.

Will my small voice be heard and have any impact? Highly, highly unlikely. The odds are good that a year from now, two years from now, vaccine refusals will have increased again in the US and the Offit armies will still be in the field attacking the number one child health resource ... their parents ... and hoping to see a different result.

Tuesday, May 04, 2010

One of my frequent complaints is with the media tendency to present "feel good" features about autism disorders while ignoring, almost completely, autism's harsher realities. In Autism and the Media at the Huffington Post Neil S. Greenspan, immunologist and clinical pathologist, expresses the same concern. Mr. Greenspan comments specially on a recent NPR broadcast in which Weekend Edition host Scott Simon speculated that a number of historical figures might have had Asperger's including Einstein, Ben Franklin, Napoleon, Lincoln and Harry Truman. To the NPR list could be added the names of Mozart, Van Gogh and .. my all time favorite .... Jesus Christ All have been speculated by media, authors and even academics to have been autistic. Greenspan notes that the feel good emphasis can distort the public's understanding of autism to the possible detriment of those most severely affected by the disorder:

There is a tendency for groups that serve or advocate on behalf of those with disabilities to focus on individual success stories, even if rare, to fend off the prejudice and even hostility that sometimes arise in the general public and are directed towards those with various diagnostic labels. I saw this first hand with elements of the learning disabilities (LD) community that, at least in some instances, were reluctant to acknowledge that some kids with LD are below average in standard measures of intelligence. The upshot was that the most vulnerable members of this population actually had even fewer options than the individuals who could be presented to the broader public as pretty much "regular" kids, with their "learning differences" minimized.

A human interest story about an individual's struggles with a disability that is tied up in a pretty metaphorical bow at the end of the piece will undoubtedly attract more reader/listener/viewer attention than a more demanding discursive, analytical discussion, especially if the conclusions are not upbeat. Perhaps, it would be counterproductive to completely eliminate the uplifting narratives focused on one individual at a time, but if understanding, not just awareness, of autism is to be advanced, a bit more of the sort of journalism focused on conveying information and not just eliciting emotion will be needed.

What really jumps at me in Greenspan's commentary is the refusal by some members of the Learning Disability advocacy community to acknowledge that some children with LD are below average in standard measures of intelligence. This is a serious issue with autism disorders where mere mention of the high numbers of persons with Autistic Disorder and Intellectual Disability can prompt angry responses. Those who refuse to see what is in front of their faces will ignore data and statements from sources such as the ICD, the CDC and the Canadian Psychological Association rather than admit the realites of Autistic Disorder and Intellectual Disabilities.

I agree that constant emphasis on a few success stories trivializes the very real challenges faced by the many who are severely affected by autism disorders. This presents an unrealistic picture of autism disorders to the public and harms autistic children and adults.

The media should tell the full truth about autism disorders including the harsher realities they present. When it comes to autism disorders there is no good reason for the media to deviate from the old maxim .... honesty is the best policy.

I commend Neil Greenspan for injecting some autism reality into the internet discussions of autism disorders. Hopefully the good people at the CNN, CBC, NYT, New Yorker Magazine and other major media outlets that obsess with the feel good autism stories will read Greenspan's commentary and take it to heart.

Monday, May 03, 2010

UPDATE: Alan Griswold is in very deep denial. I have now provided 3 credible sources to support the 75-80% range of persons with Autistic Disorder as also being Intellectually disabled - the ICD, the CPA and the CDC and Mr. Griswold can only repeat his opposition to an association between Autistic Disorder and Intellectual Disability. Of course accepting this information would require Mr. Griswold to reject his contribution to the world's discussion of autism disorders, his book Autistic Symphony which rejects autism as a medical disorder:

"Autistic Symphonyoffers a unique look at the fascinating subject of autism. Challenging the psychiatric and scientific perspectives that focus exclusively on disabilities and impairments, Autistic Symphonycelebrates the challenges and rewards experienced by every autistic individual, and argues that far from being a medical monster, autism is one of our culture's greatest strengths."

As I mentioned in my previous post Alan Griswold of Autistic Aphorisms is one of those comfortable with speculation that Jesus Christ may have been autistic but is not comfortable with the fact that many persons with Autistic Disorder are Intellectually Disabled. Mr. Griswold and Astrid at at Astrid's Journal disagree with my numerical references and wrongly describe them as self constructed.

My claim is not that 75-80% of all persons with an Autism Spectrum Disorder are also Intellectually Disabled as Astrid in particular seems to think. My assertion is that credible authorities have stated that 75-80% of persons with Autistic Disorder are intellectually disabled. I stand by that assertion and, once again, for those who actually read before reacting, offer the sources:

In that brief the CPA refers to 2 separate categories "Autism" and Asperger's":

"Cognitive impairment is present in about 80% of persons diagnosed with Autism and
general intellectual functioning is most often below average. Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning.

...

In sum, persons with ASD present with a wide range of impairments in cognition, language and
behaviour which present in some common but reliably distinct ways between Autism and
Asperger’s disorders."

2. Center for Disease Control Counting Autism
CDC’s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD. This is a prevalence of about one percent of children. These results reflect data collected by CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network in multiple communities throughout the U.S. in 2006.

Estimates are based on health and education records from participating communities, which includes eight percent of the U.S. population of eight year olds. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.

From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).
2006

From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test reults on intellectual ability for at least 75% of the children identified)

The CDC figures of 41-44% for all persons on the Autism Spectrum having an intellectual disability are consistent with the 80% figure for those with Autism EXCLUDING Aspergers cited by the CPA. These figures and sources are my authorities for the upper end of the 75-80% range of persons with Autistic Disorder having an Intellectual Disability. That is not a self constructed figure.

The lower end of the range I cite is the figure based on older sources like the 1992 ICD diagnostic criteria for Autism:

A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls.

...

All levels of IQ can occur in association with autism, butthere is significant mental retardation in some three-quarters of cases.

F84.1 Atypical Autism

A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.

These three authorities are the primary sources for my assertion that 75% (3/4 in the ICD) to 80% (CPA, CDC) of persons with Autistic Disorder also have intellectual disability. Those are not self constructed figures as claimed by Alan and Astrid. They are figures provided by credible authorities.

Sunday, May 02, 2010

One of the most unusual elements encountered by parents of low functioning, intellectually disabled autistic children is the angry, hostile reactions of some persons with High Functioning Autism and Aspergers to any mention of Intellectual Disability as a characteristic of autism disorders. A recent example amongst many that I have encountered is the May 1 comment by Alan Griswold on his blog Autistic Aphorisms and the comments by some other high functioning autistic persons in response. The commentary, including Mr.Griswold's, dismisses credible authorities like the Canadian Psychological Association and the CDC who have published statements indicating that 80% of persons with Autistic Disorder and 41-44% of all persons with Autism Spectrum Disorders are also intellectually disabled. In the place of these authorities the commentators substitute their own opinions and their obvious dislike of being associated in a diagnostic category with so many persons who are intellectually disabled.

Mr. Griswold is the author of a piece of autism enlightenment calld "Autistic Symphony". In that work, apart from the title portraying autism as beautiful music, Mr. Griswold includes a chapter embracing an article which purports to show by a review of historical references that Jesus Christ was autistic. The "Jesus was Autistic" nonsense is the most extreme example of efforts to comb history and define various remarkable individuals as autistic ... usually geniuses like Einstein, Van Gogh and Mozart. For those who identify with the autism label any talented, positive figure must have been autistic ... but not those intellectually disabled autistics living with us today.

The Canadian Psychological Association and CDC figures pointing to high numbers of intellectually disabled autisics can not be trusted but a flimsy, flaky article speculating that Jesus was autistic, well that is truly worthy of embrace by the author of Autistic Symphony. Identification with a psychiatric diagnostic manual category may help some people understand challenges they have faced. It can also, in some cases, inflame their bigotry towards those less advantaged ... towards those many low functioning autistic persons with intellectual disabilities.

Autism may well be a symphony in some people's fantasies but in the real world it is a number of serious disorders. In the case of Autistic Disorder 75-80% of persons with the disorder are also intellectually disabled. All the cheap, derogatory insults and bigotry towards those with intellectual disabilities on display at Autistic Aphorisms will not change those facts.

Knowledge is power said Sir Francis Bacon. Unfortunately the American Psychiatric Association with its treatment of autism disorders in the DSM-5 seems to disagree with Sir Francis Bacon. The decision to merge existing Pervasive Developmental Disorders in the DSM IV , and to increase the numbers of persons by adding a category for persons with "sub-clinical" characteristics of Aspergers will deprive us of much knowledge about the nature of autism disorders and aggravate existing challenges in understanding what causes autism disorders.

One of the major debates about autism disorders revolves around the question of whether autism disorders are truly on the increase, and are caused by environmental factors or triggers, or whether the startling increases (from 1 in 500 when my son was diagnosed in 1998 to the current 1 in 110 recognized by the CDC) in autism diagnoses is totally explained by the 1994 DSM-IV revisions and social factors such as increased social awareness of autism, diagnostic substitution, alleged greater access to services for autism diagnosed children etc.

Most of these excuses for denying that autism is really rising are speculative but the DSM-IV diagnostic changes are real and there is no dispute that those changes play a significant part in explaining some of the increases. The debate rages though over whether it explains all or substantially all of the increase in autism diagnoses. After the DSM-5 kicks in the debate, and our knowledge of autism disorders and whether they are really rising , will be muddied further by the expanded definition of autism spectrum disorders. Epidemiological studies will be weakened (unless they somehow can be argued to show vaccines don't cause autism) by the difficulty arising from comparing autism rates pre and post DSM-5. Autism knowledge, important autism knowledge about the role of environmental factors in causing autism disorders will be lost or obscured.

This comment was prompted by some revisions I am doing to this blog site. I added the picture, above, taken yesterday of my now 14 year old son Conor to my sidebar . When he was diagnosed 12 years ago I read of autism rates of 1 in 500. As I read the profile section in the sidebar I noted my profile note of a couple of years ago referring to rates of 1 in 150. I am now changing it to read 1 in 110. After the DSM-5 is in full effect, and assuming I am still being a nuisance on planet Earth, my profile section might well state 1 in 50. And arguments will rage over whether the figure reflects a real rise in autism diagnoses or changes brought about by the expansion and dilution of the autism categories in the DSM-5.

Autism knowledge and, according to Sir Francis Bacon, power over autism disorders, will be lost. The knowledge and power to find treatments and cures for autism disorders; to help those with autism disorders who want to be helped, who need to be helped, will certainly be diminished and possibly lost entirely.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.